Main menu

Monthly Archives: May 2018

Five years ago today I read L his very first bedtime story. Here we are:

Ahhh, the glow of new motherhood. At the time this picture was taken, L was almost exactly 24 hours old and had already had his first major surgery. I was sitting on a padsicle, wearing gigantor mesh underpants and whatever random clean clothes a family member had grabbed to bring us to change into (as it happened, those random clean clothes were matching red gym shorts and gray t-shirts for both me and Z – adorbs!). And I had been crying for the better part of 24 hours, as you might possibly be able to tell by the swollen red horror show that is my face.

24 hours in, we were trying to wrap our heads around what was happening to us and clinging to any semblance of normalcy we could find. L had arrived suddenly, six weeks early, with a birth defect we had not known about previously, and had been whisked off to surgery where it was discovered he had lost most of his small intestine and would need another surgery eight weeks later. At this point he was still sedated and intubated, and I was overwhelmed with a new diagnosis and was being bombarded with unfamiliar medical terms and wasn’t sure if L would ever be able to eat anything ever and didn’t know what his future held, and was trying not to face the unspoken if he had any future at all part of that statement.

And so to cope, in the midst of all these things that were not okay, we had gathered some children’s books, and we were reading L his bedtime story.

I will be honest: I’m pretty sure Z picked Corduroy. I don’t think I even really remembered the story at the time, and I can’t imagine I would have chosen it over several others I was more familiar with. But I was physically and emotionally spent and didn’t have the strength to make a decision, and so Z chose a book, and I read.

I have struggled to explain the extent to which L and his diagnosis are completely separate things for me. I love L more fiercely and fully than I ever knew was possible, and at the same time I so desperately wanted to wake up from the medical nightmare of those first weeks and months that stretched into years. I have wanted out a thousand times over; but that is directed entirely at the diagnosis, the medical struggles and all the suffocating stressors that come with them – which are physically part of L, but for me have never been part of who he is. From the moment he arrived, even when I was slow to bond because of the shock and trauma of those first days, I never once thought of L as anything but my sweet, perfect child. Misfortune had happened to all of us, L included, and it was that misfortune that I railed against, not L, because he was not the misfortune — but how could anyone understand that distinction if they hadn’t experienced it? I have struggled myself to understand how it’s possible to be 100 percent full of each of two emotions that are so strongly at odds with each other you think they might rip you apart from the inside out. How could I possibly put that into words that anyone would understand?

And yet here, on these pages, it is explained perfectly in the simplest of terms:

In retrospect, it’s hard not to note the parallels; the innocent baby who had no idea there was anything less than perfect about his little body; the arduous journey we took before we were able to come home at last; even right down to sewing on a new (Mic-Key) button. Looking at the first pictures of us in L’s room, I can’t help but project Corduroy’s surprise and delight at seeing his new home.

But perhaps most fitting of all was the hand-written note in this particular copy of Corduroy, penned before L even had a name yet, and well before we knew anything was out of the ordinary with this pregnancy. I’m sure I had read and appreciated the inscription when we received this copy of the book, but had not really thought all that much about it, if I’m being perfectly truthful. It’s the kind of sage wisdom that seems like common sense until you are faced with a situation in which common sense is out the window — and then it becomes the thing you most need to hear in all the world.

There, in a dim room in the NICU, in the middle of all the tubes and beeps and pain and fear, when I didn’t know what the future would hold or how I could possibly face it, were these words:

On the anniversary of our 5 years together, L, I am so proud of the kind, compassionate, intelligent, brave person you are becoming. May you grow to climb mountains and explore vast palaces; and no matter how far you roam, may you always come home to a little bed just the right size for you, and friends who love you just the way you are.

When L was born very suddenly, six weeks early and with a previously undetected birth defect, I felt like my body had betrayed me. It had not been able to make my baby healthy, and it had not been able to keep him inside as long as it should have; my body had failed him. On top of that, it had spent months hiding a birth defect that should have been picked up on ultrasounds but wasn’t, and so my body had left me completely unprepared for the journey it had suddenly thrust us into.

Due to L’s surgeries and GI needs, I was not able to hold him in his first days, and I was not able to feed him at all for the first week. I felt helpless. There was nothing I could do to heal my baby, and all of the normal things you’re supposed to do to take care of a newborn had been taken away from me.

The one thing I could do was pump. And so I pumped, and pumped, and pumped.

In the middle of all that helplessness, this was one thing my body was good at. I was very fortunate in that regard. And I clung to it. I pumped before I knew what L’s diagnosis really was. I pumped before I knew whether he’d ever be able to eat anything, ever. And at the first signs of him being able to take even the tiniest 5ml bottles of milk, I pumped harder.

At my peak I was pumping upwards of 60 ounces of breast milk each day. But for the first several months of his life, L was taking less than one ounce total each day, and he didn’t approach anything near full feeds until he was approaching his first birthday.

That made for a lot of excess milk.

The NICU lactation consultants encouraged me to donate my extra milk. At first I was reluctant to part with any of it – what if he needed it?! But as we quickly filled a whole freezer in the NICU, then our entire deep freeze at home, and then our refrigerator freezer as well, and the milk just kept coming, it became clear that I needed to share the wealth.

Donating soon became a way for me to give back, to help other families in similar situations, and to make all of those hours of pumping have a purpose when it became clear that L wasn’t going to be able to use even close to all of it himself.

When I first began donating, I was unfamiliar with the process and had no idea how to differentiate between all the different milk banks. I’ve since donated more than 2,300 ounces and counting across two children – that’s nearly 18 gallons! – and I imagine other moms new to this whole thing may have similar questions, so I’m sharing what I’ve learned.

There are basically two types of milk banks: nonprofit and for-profit.

Others, like the Helping Hands Milk Bank, process milk for for-profit companies like Prolacta, who use the donated milk to manufacture high-profit human milk-based nutritional products (i.e. supplements that may be used to fortify milk given to preemies, so your milk is still going to those who need it – but at a high price). I will admit that I did send my initial donation to the Helping Hands Milk Bank, because I was not really familiar with the for-profit/nonprofit milk bank landscape at the time, and they offer a $300 breast pump reimbursement through Prolacta for anyone who qualifies and donates at least 300 ounces. So I can confirm that this particular reimbursement program is at least legitimate, and the reimbursement came as a welcome relief after my insurance company managed to weasel their way out of paying for my first pump. But personally, I would not continue donating to this type of milk bank rather than a nonprofit bank.

There’s also the Mother’s Milk Cooperative, which I’m not even going to bother linking out to. It’s of the for-profit variety, it lures people in with the option of getting paid for your milk but seems suspect in terms of actually paying out, and it has a pretty hazy reputation among online mommy groups (not to mention the fact that when I inquired there about approved supplements, a representative from the MMC replied, “While the supplements you are taking may be perfectly fine for your healthy infant, the milk we collect goes to very sick and premature infants and we must adhere to the strictest safety standards.” Which, as you can imagine, didn’t sit too well with me since I had so much milk to donate precisely because my infant had been both sick and premature.)

In any case, I currently donate through The Milk Bank in Indianapolis, which is a member of HMBANA. The Milk Bank offers “Milk Depots” for easy drop-off of milk donations in St. Louis and in Hannibal, Mo., as well as in multiple locations throughout Indiana, Illinois and Kentucky.

It’s not hard to donate, if you have milk to spare.

There’s a screening process, involving:

An intake questionnaire

A form to be signed by your doctor

A form to be signed by your baby’s pediatrician

Basic bloodwork to make sure you’re a healthy donor

Super quick check-ins (we’re talking a 30-second email) every couple of months to see if your medications or anything else have changed.

After the screening process has been completed – and it may take a few weeks to process everything – you can simply load your milk in a cooler and drop it off at one of the depots. Alternately, they will provide coolers and a shipping label to ship your breast milk to them, if you prefer. Most banks ask for a minimum donation of 100 ounces, to justify the expense of intake processing for a new donor.

There are quite a few benefits to donating

You’re helping some of the tiniest and sickest babies survive and thrive.

I’ll pause here to reiterate my caution against carelessly throwing around the phrase “Breast is best!” without regard for the very complex emotions attached to all the many reasons a mother may be unable to or choose not to breastfeed. But it’s true that for preemies, breast milk does help give them the best chance at survival and at long-term health, and in many cases, preemie moms cannot induce lactation or produce sufficient milk for their baby’s needs. If you have a big supply, you can help.

Other benefits of donating include:

Giving back can be cathartic, especially for mothers who have experienced a traumatic birth, medical complications, or loss.

Many milk banks will provide supplies, including milk storage bottles, bags, and coolers, so you don’t have to cover that expense out of your own pocket.

You put a ton of energy into pumping, and donating your excess makes sure all that work was worth it.

It can be a way to teach your kids about sharing. G is still too young to understand, but L goes with me to drop off every time and he understands that we’re giving milk to help babies who are sick like he was.

You get your freezer space back. Remember how nice it used to be to buy in bulk?

Hey, you’re burning extra calories pumping all that milk! That means you get to eat more chocolate while helping babies. Everybody wins.

This week is Nurses’ Week. It’s also Hospital Week, or, if you work at my office, Health Care Week, because we want to be inclusive of our friends in ambulatory and post-acute. And at L and G’s daycare and preschool, it’s Teacher/Nurse Appreciation Week. They celebrate this particular combo observance because they attend a school founded by a pediatric nurse that includes a room for children with all sorts of medical complexities, staffed by nurses; it’s only fair to celebrate both teachers and nurses in the same week, since at this school those roles overlap to such an extent.

It strikes me, as we prepare our cards and treats for Teacher/Nurse Appreciation Week, what a fitting observance this really is.

In the first days and weeks, as we began to wrap our heads around new diagnoses and devices and tests results, it was our nurses who gently helped us expand our vocabulary and patiently repeated and explained again and again until we began to enter conversations with confidence.

Nurses taught us to navigate the basics of parenting in a setting that seemed so hostile to normalcy. It was a nurse who helped me learn how to hold my child, who seemed so fragile at the time I was afraid I would break him. It was a nurse who helped me learn how to change a diaper around tubes and leads and a surgical incision and an ostomy bag, and who taught me how to change the ostomy bag as well, and, later, how to change a sterile dressing, all of which became routine baby care for our family.

Nurses, too, taught us how to fiercely preserve our normalcy despite a setting that seemed so hostile to it. It was a nurse who fought for permission to take our son for walks in the courtyard, and took the time to play photographer in an impromptu family photo shoot while we were outside. It was a nurse who encouraged us to bring in a playmat and a swing, and to establish a bedtime routine before we had even left the NICU, and stepped in to read L his bedtime story when severe storms prevented us from coming to the hospital one night.

Those same nurses taught us how to transition home, and continued to offer listening ears and guidance off the clock as we learned to navigate difficult medical relationships and how to advocate for our child.

As parents of a child with a long medical history, we are deeply indebted for the incredible healthcare we have received from a countless string of nurses; L would not be here without them. But alongside that, every step of the way and especially in those early weeks and months, we are equally indebted to our nurses for the role they have played as our teachers. We are grateful, this week and every week, to the nurses who have equipped us with the skills and confidence to become the parents L needed.

What have you learned from nurses? Leave a comment below to share how they’ve made a difference in your life!